Spinal Muscular Atrophy (SMA) is a rare, life-threatening genetic disease that affects motor nerve cells in the spinal cord. The condition spans five main types (Types 0-4), varying in severity and age of onset, with Type 0 being the most severe and typically diagnosed in infancy. Children and adults living with SMA face daily obstacles as muscles progressively weaken, often making it difficult to perform routine activities like eating, dressing, and walking.
Today’s SMA treatment landscape consists of groundbreaking but complex therapies that create hope for patients, but they come with their own challenges. Because of the progressive and complex nature of this condition, individuals living with SMA require ongoing support from their medical team and care that adapts to their evolving needs.
“At Accredo Specialty Pharmacy, our hands-on approach to support, clinical expertise, and leading drug access helps ensure SMA patients receive the best possible care, customized to their needs,” said Christa George, rare product director at Accredo.
Accredo’s rare disease expertise
With Accredo’s Rare Disease Therapeutic Resource Center® (TRC), patients and caregivers never face SMA alone. Accredo’s integrated model ensures each patient has access to team members dedicated to helping them manage their disease.
Accredo helps people living with SMA through its dedicated multi-disciplinary specialty team, which engages in continuous learning and development to stay current with SMA care advancements. Their in-depth knowledge enables members of the team to recognize subtle changes in patient status, anticipate complications, and offer evidence-based interventions specific to SMA.
Accredo’s SMA team includes:
- Pharmacists, who work directly with patients and caregivers 24/7 to share their knowledge about SMA and the therapies that treat the disease. Pharmacists provide compassionate guidance, offering personalized care to patients and their caregivers to help optimize outcomes.
- Nurses with SMA expertise, who offer patient education and training on medication administration, disease management, and safety protocols. If a medication is safe for home administration, Accredo’s field nursing team can help administer the therapy while telephonic nurses remain available 24/7 to ensure continuous support for patients and caregivers.
- Dietitians, who develop precise nutritional intervention strategies based on each patient’s specific dietary needs, age, and disease progression. Their SMA knowledge enables them to account for unique issues like swallowing difficulties or metabolic changes.
- Social workers, who connect patients and caregivers with local, regional, and national resources to support emotional well-being and daily life challenges. For SMA, this could mean connecting families with resources for wheelchairs and mobility equipment or assisting with individualized education plans. They also support transitions – such as from pediatric to adult care – and help families navigate school advocacy and home environment needs.
- Patient access representatives, who help navigate prior authorizations, explain insurance coverage and benefits, and connect people living with SMA with both manufacturer and foundation-based financial assistance programs.
“Accredo’s deep bench of experts ensures each care team member plays a role in delivering timely, personalized interventions,” said Michelle Mejibovsky, a rare neuromuscular staff pharmacist at Accredo Specialty Pharmacy. “Because in SMA, minutes are neurons – every minute counts in preserving or enhancing motor function. Whether it’s coordinating across providers or supporting caregivers through emotional and logistical challenges, we are here to support.”
